Autism: A Mother Advocating For Her Son
I’m not going to take away from her story too much, but I’ve followed this lovely lady and seen (outwardly) some of the things she’s powered through, and while she may not feel qualified, who is? We are all living this life one day to the next as best we can. So, without further adieu.
I don’t know that I’m qualified to write this blog, I’m barely qualified to be a mother to two little humans who are quickly growing into smelly little bodies with lots of questions. Alas, here I go - Who am I, well I’m a mother, I’m a wife, I’m a friend and a try-hard advocate for both my sons.
I advocate in the only way I know how, by educating myself and making myself aware of the unseen around me. My oldest son is autistic, not a person with autism. Why do I say it like that? Well, autism is not a disease nor is it a sentence to a life of doom. Autism is a lifelong, genetic developmental disability that is just one of many ways to be a human in this world.
My version of the story is filled with emotion and failure, my sons’ version is much more simple and straight to the point: “I have Aspergers and that makes me more special than you.” My son is 8 years and 8 months old and he lacks self-confidence. As I’ve already stated he is on the spectrum and what they used to label Aspergers. He looks shorter than your average 8-year-old because he is and has freckles that stream across one cheek across his nose then onto the other cheek. There is nothing about him visually that says he is autistic, nor should there be. I asked his permission to put a sticker on his side of the car window that reads “You don’t look autistic either” in a speech bubble. He obliged and he gets lots of compliments from it too.
Unfortunately, I fell into the black hole of being the person and parent who, early on, said things like “well he doesn’t look autistic” or other equally ignorant things of that nature. I said those things because I watched Rainman a few times and figured this is what an autistic person looks and sounds like. Instead of doing my own looking into this, I let a produced movie tell me what autistic look and sounded like because I was lazy and naive. Autism doesn’t look or sound like any one thing, which is in part why in 2013 the American Psychiatric Association changed all sub diagnoses to just be Autism Spectrum Disorder (ASD). Spectrum is a much better word choice for a disability that looks and sounds so broadly different than almost anything else I’ve ever heard of.
“If you've met one person with autism, you've met one person with autism.”
-Stephen Shore
I fell into how autism should look very easily when I was told my son is autistic. I wasn’t in denial or felt like “how could this happen to us?!” I was mad at myself for not seeing it first. That was 4 years ago and since then I have armed myself with as much knowledge as I knew to get for him and myself. I wanted to ensure I could help my son in whatever he may need or whatever questions he may have. I wanted to also make sure I knew how to advocate for him, the RIGHT way.
There is a right way to advocate for your child and there is a right way to advocate for your child who may have a disability. So I tried to never put him into that autism box, and I talked to him about it at an early age. I try and make sure to tell him when he can use his disability as a talking point and when he is experiencing something that isn’t a special superpower.
I’ve read that what autistic people need is not awareness, but acceptance coupled with understanding ASD from actual autistic persons. This April, If you are wanting to bring awareness I would urge you to read/buy a book by an autistic person. Donate directly to a local school or person you know to help further their future success. But for the love of all that is good, do not believe that autism is something that needs to be fixed. This doesn’t send a message of understanding or acceptance when you are being labeled as a person who needs to be fixed. I don’t believe that my son needs to be fixed or cured of anything he has going on with him. I think that most of the time I’m the one who needs fixing from living in my neurotypical brain.
"Autism isn’t a burden, stressful yes, but It’s just a different way of thinking. It’s a reminder that no two people are alike and that meeting someone who thinks differently than you is a growing experience for you both.”
-Eden, with the @autisticats
Autism is a superhuman disability, which sounds like an oxymoron, but it’s how we flip the script for our young son in a world where acceptance amongst his peers is a daily concern. Scratch that - acceptance amongst his peers, adults, and parents. As one of his parents, I can say that acceptance isn’t something I always remember to do when he looks normal. I try my best, but I would be lying if I told you that through our days when he starts to stim (jumping or making noises) that I don’t lose control of my tone when I tell him to stop. Or when I’ve been out too long and he’s already asked me to go once, but I need to do or say one more thing, and then he has a meltdown and I am mad at him. He has learned a lot of his triggers and I just got lost in my world and forgot what it must be like in his.
My son is 8 and I am still learning the best ways to be an advocate for him without trampling all over his individuality and things that make him unique. I am not on the spectrum and so I try to listen to him more when he is explaining how things feel to him. I’m learning to let my child lead - while I listen - and I’ve found that when I do, things go in a direction of understanding.
- A. A.
Mother, Wife, and Friend
